Better Late then NEVER!!!

So It has been reminded to me by my dear grandfather that I do love so much..... that I have not posted in quite some time....

So hear I go:

Noah is doing great! We had his 3 month follow up appt yesterday and things are progressing. He weighs in at 27 lbs and is 37 inches tall. He was quite verbal, blowing rasberries, and moving all around on the bed at the office and the doc loved it. He is getting so big now. I was looking at him the other day and was like "he doesnt even look like a baby anymore". It is sad but in another sense it is so wonderful to see him gaining wieght and growing now.

We did get that airway clearance vest for him last month and ever since the doctor's say his lungs have never sounded better. On top of the vest we now also have oxegyen in the home in case he stops breathing and deep suctioning for his secretions. Things have been looking up. The oxegyen is so great to have. I have a sense of comfort knowing that I have it. Just two weeks ago we were able to go to a friends cottage that I havent been comfortable going to in three years because I was afraid he would stop breathing and it is harder to get to by vehicle. The oxegyen in my car made me feel comfortable knowing that I could use this until someone got to us or we could get him somewhere.

Two weeks ago after a little bit of fighting for it we recieved his car seat. Now Noah can sit foward facing in the car. This special car seat gives him enough head support to be able to do this. He now can see where he is going, instead of where he has been. It gives him more room for his legs and he absolutely loves it. The first day we put him in it he wouldnt stop blowing those rasberries and babbling in the backseat. Mommy likes it to because now I can see him during our rides to the doctors, etc.

Siezures are still a work in progress. He really hasnt been having any "big one's" lately. Its been more the small tremors and staring, etc. The doctor put him on yet another med for his siezures last month. I cant tell if its helping or not. I think it is in the sense that he isnt having the big ones but he still is having the smaller ones. I dont think this heat is helping though. We have an air conditioner is his room that we borrowed from Megan. I try to keep him cool as much as possible.

We have brought him swimming this year quite a bit already. Just this last weekend we brought him to a lake and he absolutely loved it. He kicked and splashed and smiled. It was so cute to see.

Im working on finishing my internship this month. July 23rd is my last day. ITs been a lot of work but I am excited to get that degree in my hands. I graduated in June and walked across stage...not I just need to finish so I can get the degree. ITs been alot of fun interning. I've learned some great things. And the kids are great too. I cant wait to be in charge of a classroom some day.

Still struggling with my sugars on a daily basis. Been really focusing on this since the miscarriage. We are planning to start trying in Sept. Im excited. the goal is to get my A1C down to 6.5 and last A1C measured last month was 6.8. So we are almost there.

Well I think that pretty much sums the last few months up.....

Yes, Grampa I will work harder to keep this updated.!! :)

Love to everyone.

Happy Birthday Noah

8:51 pm Noah is 3 years old! Wow time flies by so quickly. Three years ago tonight I became a mother! I gave birth to a handsome man in my life. Although we have had MANY challenges in those three years it has been the best three years of my life. He has made me the mother I am today. My world would not be as special as it is today. He has brought tears of joy and sadness, laughter and pain. But most of all he is the sunshine of my days. He makes me smile everyday. He brings me love. He makes everyday worth living.
Three years old today. WOW!!!

Lets all pray for a happy healthy year to come!!! And thank god for the past year! It hasnt been all that bad. Some struggles but not horrible.

Today Noah went for a chest xray. We had a follow up appt with the pediatrician. Chest xray came back negative. Phew. Still sounds horriible. Will do some nebulizer treatments and some vapor baths and hopefully we will keep him from getting phemonia. But the close call today made mommy hesitant to sneak in a little ice cream cake*** we will see how he sounds tomorrow. One bite will not hurt him. ITs celebration time after all.

Doctors are working on getting him a vest that will vibrate and help him to bring up some of his congestion. They are having trouble locating a vest but are still looking.
Ears look great again. YAY!!!
Woke up this morning with a siezure but nothing major. Thank god. And the pediatrician said that she saw a new tooth coming thru on the upper left hand side. YAY! Another tooth.

More.........Bad News

Last Friday we went in for my ultrasound.... the baby had grown and you could see something this time....however bad news was to come. Our excitement came to a quick hault when the tech said she was very sorry but the baby didnt have a heartbeat. Or little angel was no longer living. It was a tough night. It has been a tough weekend. But we plan to try again in the near future.
So even after this sad news I put my tears and sadness away for one day and we still had Noah's 3rd birthday party. What a beautiful day we had this year...and what a wonderful turnout we had as well. I couldnt have asked for a better party. It was nice to have a day full of smiles and fun. Great to see family and friends that we dont get to see often...and Noah even snuck in just a 'lil bit of ice cream cake..
I honestly cannot believe he is turning three this year. Time goes by so quickly. Looking at him yesterday he doesnt even have his baby face anymore... my baby is growing up so quickly. Well now that we have got so much bad news this last month about Noah maybe his 2010-2011 year will be a healthier and happier year this time. I say that every birthday but just maybe this will be the year.

Month of April

The month of April did not go over so well. We had two weeks of hell. The first week we were told that Noah is "legally blind." Although I expected it, it was still very hard to hear. Then a week after that we took him for his swallow study in Lewiston. They tried both solid foods (mashed potato, and apple sauce) and then they tried liquid. He failed all three. He aspirates everything and can no longer be fed by mouth at this point. The speech therapist in the test said that the therapist at home could work with him but at this point Noah shouldnt be fed by mouth. This was very upsetting news to me. I knew he was gonna fail the liquids and was okay with this, however I really really wanted him to pass the solid foods. So we are pumping on a daily basis. Sometimes if the girls are eatting a lolli pop I will have them rub it on his tongue so he can get the flavor or if Im having a freeze pop I'll do the same thing but he cannot have anything he actually has to swallow. However his 3rd birthday is coming up (wow the time goes by so fast) and we are having a party for him this weekend. He loves ice cream. Grampa got him started on that at an early age. So Aunt Linda's making an ice cream cake and Noah is still gonna have a little bit of ice cream on his birthday.
Yes, he is turning three I cannot believe it. I really cant. He is growing so fast. Getting so big. I wish we have had more first's since last year but we dont. He has improved so much though. We are gaining and thats all that matters.
After all the bad news in April, the end of April brought a surprise to the family. It seems that we are adding a new addition. I am pregnant. I am about 7 weeks pregnant. After the shock wore off we are all very excited. Honestly I am nervous too. But thinking positively. We are going to have a happy healthy baby. And everyone keeps asking me what I want this time a boy or a girl. My answer is 100% honest and to the point. I dont care as long as its healthy. Many friends and family pass encouragement saying they have a good feeling. One friend says "God wouldnt do this to me twice, he knows you couldnt handle it." I hope they are all right and I pray every night. Please pray with me. Im super happy. Erik is very supportive and I know this baby will be a blessing. It already is. We are due on December 13th. Right before chirstmas what a wonderful gift.

More not so great news!

Yesterday was Noahs eye exam. I was hoping for good news however it wasnt the case. The doctor did a bunch of tests on him using different toys and lights and colors. One test tested wether Noah had a connection with his brain and eyes. There was no movement therefore no connection. The doctor did this test several times not wanting the results to be given to me. Noah is legally blind. He has some periferial vision but no central vision at all. "Legally Blind" is such a little word but such a blow to your heart when you hear it about your child. This doesnt change any of my feelings toward him. I love him just as much as I did Sunday night before we found out and we will work through this. Just as we have done so through the rest of the not so good news we have recieved in the past. Im not going to lie and say it is easy because it is not by a long shot. I spent a lot of yesterday very upset. But we will do everything we can for him.

Rough winter!!!

This winter as you can read in the subject of this blog has been a rough one. Noah has been sick with something one after another. Mostly we have had three phemonia's in the last 3 months, a viral cold close to another phemonia, and a few retching episodes. Its been very stressful for me and I cannot wait for spring in hopes Spring brings better health. Just last week we went through the viral cold that was very close to phemonia in my opinion. We had many nights of steamed bathrooms for 15 minute episodes, vaporizers, lots of suctioning of his saliva, pounding on back, etc. His stats were very low at night dropping into the med-high 80% oxegyen level and sometimes dropping as low as the high 70's. Very scary. He does however seem to be doing better this week. (knock on wood) He still seems congested at times and has a horrid cough at times but his stats have been in the high 80's to low 90's so Ive been happy.
We started night time nursing last week. Last tuesday to be exact. And I have to say that it has helped so much. The first night I was a reck and didnt sleep very well...worrying and having nightmares about leaving him with someone new. But after that night and seeing how well she does with Noah has relived my worries and Im getting the sleep Ive needed for a long time. The nurse we have is great she is very attentive, and when he wakes up with her at night she gets some PT excersises in and reads to him and cuddles him of course. She seems to be a good fit for the family.
I did go see the specialist for my foot and luckily no surgery as of now. However he was lovely enough to put a Cortisone shot into the bottom of my foot. MAN THAT HURT! but it is doing better now. I have plantar Fasitis meaning tendons in my arch are severely strained and tearing. PT excersises and the coritsone shot and it should get better. Hopefully. IT does feel somewhat better however since the shot Ive been struggling with charlie horses at night in the bad foot. Nothing seems to help. So hopefully that goes away the more I do my PT.
Noah has been set up for another swallow study. I am really Really nervous and stressed about it. They think that his aspirating has got worse and this is the cause of the increase in phemonia. I cried in the office when it was suggested we redo this test. This is the fight Ive been having since he was 6 months old. I want him to be healthy and I do want to find out but I just dont want to take food by mouth away from him. I agreed to do this test on one condition and that the test be done by a different hospital other than MMC in hopes for an unbias opinion. I have really worked and fought hard on Noah drinking bottles and eatting by mouth and it scares me to get this taken away. His appt is April 14th at Central Maine Med in Lewiston, ME. Erik and I will be bringing him and Im really praying that it is okay news. I have decided that as much as I would hate it Im ok with them telling me he cannot drink from a bottle (as tears stream down my face) as long as they say its still ok to eat icecream ( he loves it thanks to his grandfather LOL) and solid foods. Just this one thing is all I pray for everynight.
We also have an appt scheduled to an Orthepedist to look at his curvature of his spine. This is scheduled for April 26th. I hope this is not bad news as well.
Noah is now set up with Case Management services now and the lady we met with seemed to be great in that she was going to help us to get some great things. It feels good to have someone on my side who can help me now.
So March seemed to bring adventures through the sickness realm....Im hoping and praying for April to bring good news, answers, and health.

Another Hospital Visit

So this month has not started out so good either. Sunday Noah started to sound really "junky" and was running a temp. I tried to handle this without going to the hospital or doctors office--crossing my fingers it was just a cold. Sunday night his stats were really low...so Monday morning I took him to Goodall Express in Waterboro. They listened to him and took his oxegyen stats as well... registering at an 86 % the doctors decided that Noah needed oxegyen and should be brought to Maine Medical Center by ambulance to get the care he needed. He has phemonia. So we spent the night in the Barbara Bush Hosiptal.
He is home now and we are doing everything we can to get him feeling better. He is doing better but we are still struggling a little. Last night his stats dropped to 81 at bedtime. We brought him downstairs and steammed up the bathroom and brought him in there for 15 minutes. I set up his Vicks WAterless Vaporizer in his crib and we got his stats to stay at 89-90 all night. Mommy was a nervous reck all night but it worked.
I went to SMCC yesterday to get my foot looked at finally. It has been hurting me for at least 9 months but I have been to stubborn to go get it looked at. It has finally got to the point it hurts so much to put any wieght on it and it just aches all the time. So I went. Xrays confirmed that I infact have a pretty big heel spur on my foot. I go to a specialist on Monday and Im a little nervous that they are going to say its surgery time. But maybe besides my fear of needles this might be the best choice anyway so that I can get it healed as quick as I can so I can be back to my 100% self for Noah. We will see how it goes Monday.
So Today I registered for the Epilepsy Walk again. I really hope to raise more this year than last year, and Im hoping that all my family and friends from last years walk does it this year too. Here is the link to my page:Please go on and help me raise money to a cause that means so much to me and my family. And anyone interested in walking let me know you can join my team!